Help: Hi, I was diagnosed with fibromyalgia... - LUPUS UK

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tunnah profile image
13 Replies

Hi,

I was diagnosed with fibromyalgia 3 years ago, however I do not believe I have this. My symptoms are more like lupus. Everyday I am fatigued, in pain, I get blood blisters in my throat and mouth, and everyday I come out in a rash! Sorry to sound moany but I am not convinced this is fm. I'm hoping my doctor will listen to me if I ask for a blood test to diagnose lupus. Is this possible?

Thanks for listening to my ramblings

Tunnah

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tunnah profile image
tunnah
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13 Replies
pattismith profile image
pattismith

Go and have a talk with your Dr and give him your medical history and request you be tested :)

tunnah profile image
tunnah in reply topattismith

OK thanks for your help :)

Loopybunnydbz profile image
Loopybunnydbz

Yes you can have a test! Just ask for one!

Hi

When I first started to hurt all over a few years I went to my GP many times until he said its proberly fibro and said there's little he could for me but never did any blood tests, this left me feeling very frustrated. After suffering for a further year in silence I decided to go back but this time I saw a new GP and he picked up on lupus almost straight away. I had bloods done and then a referral which lead to a diagnosis of lupus.

Sadly it can take a long time if ever to get a confirmed diagnosis but it is important as lupus must be monitored regularly no matter how mild.

I would go back to docs and ask for bloods to be done again for inflammation and don t give up.

As far as I'm aware fibromyalgia isn't really a diagnosis as such anyway it's a description of a collection of symptoms i.e. muscle pain etc. Doctors use it to describe your condition when they can't find a cause. So you are are probably quite right you do probably have an autoimmune condition but that doesn't necessarily make the fibro description wrong. But yes it is annoying when they stick at fibro and leave it at that...telling a person they have fibro doesn't help them understand why...which is really frustrating!

Once you are diagnosed with something you won't have to say for example "I have fibro and Lupus"...you can just say that you have Lupus as it implies muscle issues etc anyway

mstr profile image
mstr

Hi there....trust your own instincts and seek advice from GP, Good luck xx

Just found this...

"...Psychiatrists often view fibromyalgia as being a type of affective disorder, and specialists in psychosomatic medicine tend to view fibromyalgia as being somatoform disorder. The controversies involve both healthcare specialists as well as patients, who often object to fibromyalgia being described in purely somatic terms..."

...this might be why we get no respect! :(

x

tunnah profile image
tunnah

Thanks everyone, this has been a big help. For years I've been led to believe that it must be in my head. I have had no tests and I feel I'm fobbed off because I'm on anti depressants and pain killers. I'm off to see the doctor on Tuesday, so fingers crossed I can get some answers.

:)

SuePlu profile image
SuePlu in reply totunnah

Tunnah, I am sorry you are having such a hard time, but please don't let others put you for on the fibro diagnosis. Regardless of other opinions, it IS a real condition and is actually fairly common to have both. Also keep in mind that fibro also causes fatigue and pain, especially during times of stress or weather changes. I do think that of you are concerned that you ALSO have lupus, by all means ask your doctor for bloodwork! Good luck in this journey!

Good luck for tuesday Tunnah hope it goes your way !!!

I think you have COMPLETELY misunderstood me sueplu and that is a shame. I was diagnosed with fibro. I think you might want to reread my post a bit more carefully. I have experienced HELL with these symptoms. My point was that tunnah has fibro AND lupus so her fibro diagnosis wasn't wrong, you can have both....AND that once she is diagnosed that telling someone you have lupus will also COVER the fibro diagnosis because Lupus INCORPORATES fibro. And my post about the psychiatrists was personal anger at how doctors don't take us seriously when they see our fibro diagnosis....that I think it is WRONG.

Please read my posts properly in future...I understand you are probably angry about the things up you have been through so you feel like venting...but you haven't taken the time to see I am speaking from the perspective of a fibro sufferer and am actually SIDING with tunnah.

What you have written about me is cruel and unfair and I'm afraid the only bully here...is you.

tintin49 profile image
tintin49

I have lupus sle and I was never told I have fibro even though I have had the pain associated with fibro. one lupus specialist said on a letter that I have myalgia which I assumed was short for fibromyalgia. I have been referred to a pain management team who just said you do have fibromyalgia biy its for me a symptom of my lupus. I think he was trying to say that the lupus has given me the fibro. never once has any dr outright told me this. this directly affects me more than the lupus and I think that plaq makes me fee worse so don't want to take it

Aw sorry the plaquenil makes it worse...that's what my doc told me...lupus causes the fibro

Hope you find the right treatment for you soon

xx

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